questions

Hi
I am new to this site having been given this website by a friend. Yesterday I was told I possibly have breast cancer and I will find out on Monday for definite. At the moment I am numb and facing the darkest week of my life. The Macmillan nurse I saw after I was told said that I had to write down a list of questions and bring it with me on Monday she said I may not even need it but it was just in case I was diagnosed as she said I wouldnt remember anything. I am strugglng to think of questions and wondering if you could give me some guidance on what I should be asking.

Many Thanks

Hi Spottyfiend - just noticed no one has responded to you, so bumping this up for you.
It’s all very frightening and confusing. Hopefully your results on Monday will be positive. The waiting is absolutely awful.
My advice would be to take someone with you to the appointment who should have a notebook and pen to record what you are told. If you are given not so good news, you will probably be told what treatment is planned for you and questions will come naturally. Just don’t be afraid to ask anything that comes into your head and encourage the person with you to speak up also.
If you do need treatment, once you know your treatment plan, it becomes a bit easier to cope with.
Good luck on Monday.

Pauline x

Hi,

I have just finished my treatment, so if you need to ask me anything feel free!.Until you know the diagnosis its impossible for you to know what to ask, I am sure at the moment all you want to know is whether it is cancer or not and I know the waiting is awful.

Take care

Julie
x

Hi

At the moment you are in the worst place possible.not knowing and worrying yourself silly. You didn’say what tests were down to determine if you have this c…p disease. Hopefully Monday will come and you will walk away will a Hugh smile of refief.

Try and take someone with you. If your news is bad they should tell you what will happen next and it is best to have a second set of ears to hear the bits you miss. Your main question will be what happens next. To you it will all be new and frightening but to the doctors and nurses there will be a set pattern.

Let us know what happens - we are all here for you if you need us and will answer as many questions as you want us to

Andie

Hello SF,

Sorry to hear that you could possibly have to join our club. The waiting game is really difficult - you can’t concentrate on anything and think BC the whole time and imagine the worst.

I guess if you were told that you possibly have breast cancer then there is still a very good chance that you don’t have breast cancer? So that’s a positive. AND if it does turn out to be cancer, then most cancers are curable now and you will feel SO much better when you have a plan of action in place as you then start taking control.

With regards questions - I’m not sure what they’ll be able to tell you about your treatment plan etc until you’ve had surgery or an MRI scan. So the questions would be about what kind of cancer you have and more about what happens first - surgery (after which they will have a better idea of the size of the tumour and whether it has spread to your lymph nodes - this affects your treatment plan) - or an MRI scan to checkout the size of the tumour (many of us are having chemo first if we have larger tumours to shrink the tumour before the op). Then after the MRI scan or surgery they’ll know LOTS more and be able to give you a detailed treatment plan.

You’ll then feel much more in control and less panicked and as though you’re in a really bleak place. Yes - there’ll still be down days and wobbles, but everything is doable. I was SO worried about everything! But with many lumpectomies you can’t even notice where they’ve taken the lump from (apart from a little scar) and with mstectomies, the reconstruction is AMAZING nowadays (I’m having a double mastectomy and was really scared of what the reconstruction would look like - but not anymore). And even if you did need chemo (big IF) it’s TOTALLY doable and nowhere nearly as awful as you expect it to be.

Anyway - this would only be applicable IF your tests come back as positive. I hope it wasn’t too much info - I just know that I was sat around worrying about everything and terrified of the thought of operations, chemo etc. But it’s honestly not that bad. There’s also alot of support both on the forum - and you can chat to nurses and people who’ve been through breast cancer in a very similar situation via the helpline.

REALLY HOPE THE NEWS IS GOOD NEWS!! And try and enjoy the weekend. The sun’s meant to come out!!

Let us know how you get on. We love good stories on here!!

x

Hi

Good luck for monday - do hope it’s good news. Just in case it isn’t, do take someone with you as a second pair of ears. You will never be able to ask all the queations you want/need to, so make sure you get a contact number to call for anything that pops into your head.

This bit is the worst.
Sending hugs.
Dx

Oh dear, that’s rubbish isn’t it. You are in the darkest place at the moment, waiting for results and feeling like you have the sword of Damocles hanging over your head. The Waiting Room is horrible, and not knowing is utter torture. We all know what you’re going through, though that doesn’t make it any easier for you, so here are a few things you might want to think about.

I suspect you have very little clue about this breast cancer stuff. A good place to start is the Publications part of this site, particularly the early bits, where it lists some of the different conditions you might have, as not everything that is looked at in the breast clinics turns out to be cancer, and it also lists the different types (there are about 15 different types!) of breast cancer. The most common type is invasive ductal carcinoma, or IDC. Some cancers are stimulated by hormones - Oestrogen (often written on here as Er+ if that’s the case) and Progesterone (Pr+). Some are also stimulated by a growth factor, you may see people writing about being HER2+.

YOU MIGHT NOT NEED TO ASK ANY QUESTIONS AT ALL, and of course we’re hoping that is the case, but if you do, I suggest the following list of questions. You’ll probably be told all of this without needing to ask, but probably not a bad idea to have the list to hand anyway. Write your questions out with a bit of space in between to write the answers, I got a little notebook, 1/4 the size of A4, and wrote one question on each page, so there was space to write down what you are told. Writing the answers down as you’re being told can be helpful in pacing the meeting too, to give you time to absorb what you’re being told.

What type is it?
(There are lots of different types)

What grade is it?
(Grade 1 = cells not very different from normal cells so generally slow growing, Grade 2 = medium, Grade 3 = most different from normal cells so generally faster growing. If it’s a type called DCIS, which is a kind of pre-cancer, it’s not given grades but is low, medium or high.)

What size is it?
(Some are tiny, just a matter of millimetres, others can be very wide spread through the breast and measured in centimetres. Size affects what they decide as the treatment plan.)

Is it hormone receptive, and if so, what are the scores?
(They’ll be expressed as scores out of 8, you’ll see on this site people talking about being 6/8 or 8/8. If it is hormone receptive, they can use hormone therapy to help treat it or prevent recurrence.)

Is it HER2 receptive?
(If it is, they can prescribe Herceptin. Around 25% of tumours are HER2 receptive. Herceptin is usually prescribed with or after a course of chemotherapy.)

Does it look like it’s spread to the nodes?
(These are a “safety net”, so even if it is in the nodes that doesn’t mean you have secondaries, it’s just that the nodes are doing their job in catching any cancer cells that are trying to spread. If it has, it is very likely you’ll need chemotherapy.)

What is the treatment plan?
This is the most wide-ranging question, because treatments can include some or all of a range of treatments - surgery, from lumpectomy (called Wide Local Excision or WLE) to mastectomy, with or without immediate reconstruction; chemotherapy, and there are lots of different regimes that different oncologists choose to use, depending on what exactly they’re dealing with; hormone therapy, which could be Tamoxifen for pre-menopausal women or either Tamoxifen or drugs called aromatase inhibitors (AIs) for post-menopausal women; radiotherapy; and the order of treatments differs depending on what they’re dealing with.

It’s such a confusing time, I don’t want to overload you. Take a read through the leaflets I suggested (someone will be along shortly from BCC to point you at them, I’m sure). There are also other suggestions for what to do.

DON’T GOOGLE. There are lots of very scary sites out there, so stick to the reputable ones, like this one, Macmillan and the like. Ignore sites that are designed to separate frightened people from their money.

Don’t be in a rush to tell everyone. Take your time, come Monday there might not be anything to tell!

Try to bring someone with you to the appointment if you think you need that extra support. You could even give them your notebook and get them to write things down for you - if the news is bad you might not be able to take it in.

If you’re really struggling, get an emergency appointment with your GP who might be able to prescribe you a couple of sleeping tablets to help you sleep at nights between now and Monday. Several people have found them really helpful for dealing with The Waiting Room.

Browse round the forums if you want to, and ask any questions you think of. Very few of us knew anything about cancer before we were hit with it ourselves, so we’ll try to help, or point you in the right direction.

If you want to speak to an understanding and knowledgeable human voice rather than just typing, give the helpline a ring. It’s staffed by people who will not judge, but are a sympathetic ear. It doesn’t matter if you just blub down the phone, they’ve heard it all before.

THERE IS NO SUCH THING AS A SILLY QUESTION.

I’m sure there are other things I found useful but I can’t remember them all. Others will be along with some suggestions, I’m sure.

You might not need any of what I’ve suggested above, I really hope that’s the case. Please let us know how you get on on Monday, and in the meantime have a virtual hug. (And by the time I’ve finished this BOOK I’m sure others will have replied!)

CM
x

Thought you would like to hear from someone who was just where you are 7 weeks ago. they had done scans and taken biopsies, but said it might or might not be cancer. Much to my horror and surprise (this cannot be happening to me can it) the biopsy said cancer, albeit a rare and not very agressive one. so I went on holiday and aranged to have it out when i got back(technical term WLE) and my nodes checked (SNB).

Op was three weeks ago, and although i take ages to recover from anesthetics I am now driving, drumming and running around as usual. (although when i climbed the stairs at the tube today I was puffed when i got to the top) The pain has realy been minumal, didnt need painkillers and i am a real baby when it comes to pain. The scar is neat and I dont have a dent.

When they got the lump out they found it had all sorts of different cancers in it, some more agressive than others, but my nodes were clear. so I am now having 4 weeks rads and 5 years of tamoxifan tablets(thats hormone therapy) I’ve had my radiation planning and apart from the inconvenience of going every day and the slight possibilty in my case according to the nurse of some soreness I am expecting to sail through it. I am a drummer and they have said there is no reason, with the right bra, why I should not continue to practice and perform through the treatment.

So the reason for this long story is to say, that even if you dont get good news on monday, its not necesserily as bad as it could be.

The worse part of the whole process were those weeks between hearing it might be cancer and getting the results after the op. I would gladly go through the op several times if it meant I could have missed out the waiting for results. Some people cope better than others, I went into a complete state of shock, not crying or freeking, just a numb exsistance. Not able to concentrate, not able to think of anything else but what might be. Ranging from coming away needing no treatment(of course that is what it will be – I cannot possibly have cancer) to looking up websites for wigs and hats and thinking about getting my eyebrows tatooed again(i lost all my eyebrows when my thyroid went wonky)

you asked about questions. You only need to ask questions if they want to do more treatment Ask if they are doing a sential node biopsy. As you learn more the node bit will come clear, it will be a big relief to you if your hospital do this proceedure because it is less invasive than other node tests (which are still ok just not as good). i would also have a look at your diary over the next six weeks. I know your health is the most important thing but if you have a wedding or importan occasion that you would prefer not to miss, then mention it to them if the tell you that you need to go, and unless there is a huge urgency they can work round it. Some people want to cancel everything and just get it over asap but some would rather not miss important family occasions

So all the best for monday, but even more, all the best over the next few days. if you think of more questions or want to rant ,everybody is here to help.Remember there is no normal way to react, calm, frantic, angry,sobbing its all par for the course. dont try and change the way you feel, just be kind to yourself.

Thank you everybody. I’m still suffering from all sorts of emotions and irrational thoughts. I am trying to imagine my glass half full not half empty but its very hard work. I have got through 2 days so far just another 3 to go now, I have never wished my time away so quickly before. I will let you know the outcome on Monday,thank you once again for your kind words and support xx